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Wednesday, March 13, 2013

Today is TRISOMY 13 AWARENESS DAY, a day when families like mine can join together and remember our precious children and know we aren't alone.

Bennett-Chadlen, aka Nimkee, was born on March 29th, 2007 at Mount Sinai Hospital in Toronto, Ontario, Canada, and grew his tiny, perfect wings 8 days later at the Hospital for Sick Children's NICU (neo-natal intensive care unit).

Monday, March 14, 2011

~Today, myself and many other families around the world took part in remembering and honouring our Trisomy 13 angel-babies and miraculous survivors. The 13th day of the 3rd month signifies the addition of the 3rd COPY of Chromosome 13 which contraindicates Trisomy 13.

The most significant of all is that March 29th, 2007 was the day that my youngest son Bennett-Chadlen Roy was born at Mt. Sinai Hospital in Toronto, Canada, and spent his entire 8 day life at Sick Kids Hospital NICU.

Bennett-Chadlen was diagnosed with Trisomy 13 halfway through my pregnancy, in my fifth month. I had no idea what it was, and what it meant for his life. I just knew that it had to be something bad judging by the look of horror and pain on my midwife's face as she tried to break it to me as gently as possible.

How do you tell someone that their unborn child is affected by a rare chromosomal abnormality which often results in death prenatally or shortly following birth?

March is TRISOMY AWARENESS MONTH. It is the one month of the year when all families of children born affected with Trisomy can join forces and inform our family and friends what Trisomy is, and what it means to us.

What began is the worst possible nightmare that I could possibly imagine, has turned into an unbelievable journey of unconditional love, pure acceptance, grief, healing, and joy. Why joy you might ask?

My son gave me the greatest gift imaginable. He opened me up to the most intense feeling of love that I could never imagine without experiencing it firsthand. There are no words for the wonder and depth of admiration that I felt for this tiny, unborn son of mine. Every single moment of time, every tiny little heartbeat......was graciously celebrated within my womb. I spent each day rubbing him through my belly, speaking his name as I described what I could see and what "we" were doing. I spent countless hours rocking him in front of the fire at night, in a room lit only by the flames. I celebrated every kick and prayed for many more. I shed tears that I thought would never stop.

Through the gift of my blessed boy, I learned to live spontaneously and squeeze every amount of happiness out of each and every day that I can breath. I welcome life, I rejoice in the ability to experience the rain, wind, snow, and sunshine. I hug my boys as often as possible, and never allow a day to go by without them knowing how much they are cherished and loved. The same goes for the special people and friends in my life.

Through the internet I was able to not only learn about the survivors and families affected by Trisomy 13, but I was also able to reach out and 'meet' others in similar situations and seek comfort and solace within their words of support which they so generously gave to me when I enquired or requested it.

As I near my sweet boy's 4th Heavenly Birthday I can't help but feel sentimental and think back to those final days 4 years ago as I was waiting for him to be born.

I can't explain it, but I can show you the beautiful photos which were provided to me courtesy of Heather Renee Morgan of Lifespark Photography.

Many have asked, What does "Nimkee" mean?

My sister helped me bathe Bennett in the cedar bath....he was rubbed down with washcloths dipped in the water. One of the women smudged Bennett with his very own eagle feather to cleanse him..... there was drumming and singing also.....it was very moving and spiritual.

They had offered tobacco earlier in the morning and prayed to hear from the Spirits for a name to give to Bennett.....his native 'Spirit' name.

Their prayers were answered, and Bennett was given the name "NIMKEE"....which means "LITTLE THUNDER".

From now on, when I hear the thunder......I am to know that it is my NIMKEE letting me know he is near. Coincidently....I have always loved storms.....especially the rumbling of thunder in the distance. I now look forward to many.